We arrived here late on Sunday and checked directly into the hotel. The next morning we woke early, the sky was blue, the sun was shining, and so it was straight down to the beach to soak up some sun, and have fun in the sand and sea.
Err, no. Hold on a minute. There must have been a shift in the spacetime continuum. That was an exert from my blog in a parallel dimension that somehow found it's way into this. Best start over ...
We arrived here late on Sunday, it had clearly been raining a lot. We stopped off at the hospital to collect keys and directions to the parent’s house, and then drove the short distance to our accommodation. Having driven up and down the road in near darkness for a good fifteen minutes we eventually stumbled upon the entrance we were looking for. The driveway was swimming in water and we subsequently learnt that the rain had only relented earlier that day having been pretty much non-stop for the best part of three weeks. ‘The worst summer I have ever known’ was how the doctor at the hospital described it. The weather since we’ve arrived has been glorious sunshine, so that’s something I suppose.
The parents house is spacious and more than adequate for our humble needs. There is a shared kitchen, and each room has it’s own kitchenette with fridge and double hob. The only slight downside is that Alison’s message that there would be three off us got lost somewhere between the hospital and the house. Consequently we have been taking it in turns sleeping on a pump up bed on the floor, whilst the other two share a sofa bed. When I say ‘we are taking it in turns’ I mean me and Alison of course. This morning I woke up at 4.30am to find Adam had vacated his side of the sofa bed was occupying the majority of mine instead.
The journey, all 700+ miles of it, was long but fairly stress free. Except that is for a lone incident when we drove away with the camper van roof still raised, and cupboard draws not secured, after stopping off at one of the many ‘pissoirs’ along the 100+ mile stretch of motorway leading to Greifswald. Just as well it’s not the busiest of roads. We left early afternoon on Saturday and had a clear run down to Folkestone and straight on to the Eurotunnel. It wasn’t very busy and we had no problems boarding and getting across to Calais. From there we drove for a couple of hours through France and into Belgium, eventually stopping for the night at Ibiz Sint Niklaas, just before Antwerp. One thing that has been invaluable is Adam’s blue badge, especially when driving a camper van at 2.2m in height. Being unable to use the underground car park it enabled us to park almost directly opposite the hotel, and we’ve since found it equally useful when parking in Greifswald as well.
The hotel (and town itself) was quiet, but very nice. The rooms were good (and cheap!) – the only thing we wanted them for was to sleep in for one night. Slight confusion reigned at check-in when they first offered us two rooms, and then explained the rooms had interconnecting doors. Not in the sense that we understand they weren’t. We figured it out in the end - we had two entirely separate rooms, with a third door that locked across the hallway securing access to both. Adam was quite chuffed to be having a hotel room all of his own.
We planned to be up and away nice and early on Sunday, but it never quite materialized. We gave Adam the choice of having breakfast first or getting some miles on the clock, and he opted for the latter. So an hour or so later we pulled into services and had breakfast. Lunch was cooked in another service station a few hundred miles further up the road; a first for Alison, having never cooked in a car park before. The food was good, but was the scenery wasn’t up to much. Mostly German football fans, stopping off before a game to drink beer and head up into the bushes to empty their bladders. They weren’t paying €0.70 for the pleasure of using the toilets in the service station itself, not even with the promise of a €0.50 voucher towards the cost of a coffee in return.
Adam was an absolutely superstar throughout the entire journey; a journey that began just after 2pm on Saturday afternoon and ended just after 9pm on Sunday evening. We never told him off once throughout. Whether the next nine journeys of a similar length will be the same I
doubt have no idea, but it was a good start. We hooked up the laptop to the 12V electric system and he spent the entire time watching his favourite TV programs and movies non-stop.
We were requested to attend the hospital at 9am on Monday morning to start treatment, and we weren’t too late considering we hadn’t got settled until nearly eleven the previous night. Adam had bloods taken (lots and lots and lots of blood), we applied an emla patch to anaesthetise his thigh in preparation for the IL2 injection. and were then taken for an EEG. This was a baseline, he will have them regularly to check for abnormal brain activity caused by the antibody therapy. The injection itself was over in a matter of minutes. Adam was very happy to discover the needle was nothing like as long as his evil father had made it out to be! As long as he was able to get the plaster ready to put over the small puncture wound he was content. The injections are alternated between legs, so by the time we reach the end of next week he’ll have had five in each.
Having arrived at 9am (well I’m calling it 9am anyway), we were done and out again by 11.30am. Alison contrasted it to what we are used to in the UK, and how we seemed to have got a lot done in a short space of time. It was very efficient there’s no doubt, but also the hospital wasn’t exactly a hive of activity. The place is only a few years old, and parts are still under construction (though I am not sure if they are hospital of university buildings). There weren’t a lot of people around at all, and it was all rather serene compared to what we are used to. The oncology ward, and the immunotherapy treatment in particular, is very multi-national; the other families in the parent’s house are from Israel, Russia, Greece, England, and Turkey.
Today (Tuesday) we were back up at the hospital for 9am again for the second injection. This time we’d already applied the patch before we left. Before the injection itself we were taken down so Adam could have a full body bone density scan. They do this to assess impact of the immunotherapy on bone growth – another of the long long list of possible, though as yet unquantifiable, side-effects. We were out just after 10am. We didn’t pass long lines of people sitting waiting for scans, and x-rays. In fact we didn’t pass anybody sitting in any corridors waiting for anything!
For the first week of only IL2 injections the main side-effects we were warned about were fever, and flu-like symptoms. On Monday afternoon, when we headed out to a nearby shopping centre, Adam did complain that he was tired and wanted to sit down, but that was the extent of the ill effects. Today after leaving the hospital we travelled briefly to a nearby fishing port and beach, before having a walk through the town centre. When we arrived back at the house Adam started to complain of feeling cold and shivery, and sure enough when Alison checked his temperature it was on the rise. We gave him paracetamol and that got him through lunch. He’s fine at the moment, but we’ll see what the rest of this afternoon and evening brings.
We’re under no illusions, next week is when the serious stuff starts …. we’ve been warned by both doctors and parents alike.